Refugees face new challenge

It took courage for Noe Sebisaba to tell his fellow Burundian refugees in Kanenbwa camp, in western Tanzania, that he was HIV positive. Sebisaba had known since 1998, but fear of stigma in a society where issues involving sex are not openly discussed had kept him silent. It was only when his wife died of AIDS in 2001 that he decided to disclose his status, and to go on and create an organisation to help educate people about the pandemic. "Yes, to be HIV positive is a shame in our refugee society," he wrote of his dilemma in a refugee organisation's annual report. "To say it openly is like saying that you are a prostitute. A long time ago, in Burundi custom, to stand accused of sexual intercourse outside marriage merited death as punishment. Even though that doesn't happen nowadays, we feared the community would reject us." "I have chosen to say it openly. [But] I seek when and to whom to say it. I fear to be rejected. I'd like to change the way things are, but HIV/AIDS is fatal and there is no cure," Sebisaba, 34, wrote. In the face of fear and ignorance, Sebisaba's example is one of just a few cases where refugees have felt able to openly declare their HIV-positive status. Sebisaba's organisation, Stop AIDS - Nkebure Uwurriva, has brought together many of the camp leaders and, in collaboration with the Tanganyika Christian Refugee Service, has set about educating refugees on HIV/AIDS through workshops, drama and video presentations. "Stigma and discrimination are considered to be the major issues for refugees that are HIV positive," said Terry Pitzner, a community services officer for the UN's refugee agency, UNHCR. "However, it's nothing that western culture didn't experience at first. It took a while to get over the stigma that it could be passed in a multitude of ways, not just through sex outside marriage." Humanitarian organisations have been able to find Tanzanian HIV-positive groups to promote HIV awareness among their staff, but within the camps such associations are only just beginning to be formed, Pitzner noted. One of the basic problems, he said, was the traditional taboo in Burundian culture for parents to discuss issues related to sex with their children. As a result, youth groups and social centres within the camps are now being targeted as a way to help educate young refugees about HIV/AIDS. The concept of the youth centres is simple. Rather than trying to promote HIV/AIDS awareness in health clinics, where elder members of the community or their family are also likely to be, sex education is taken to the youth centres, where the adolescents gather anyway to play sport, watch TV or use a library. However, as a recent UNHCR/World Health Organisation (WHO) commissioned report on HIV/AIDS programmes in Tanzanian refugee camps suggested, there were still cultural issues that complicated sex education. In some cases, for example, it was considered "inappropriate" for unmarried Burundian girls to socialise with males at the youth centres. Religious leaders that demand HIV tests before marrying couples have also contributed to the problem, the report added. There were cases of marriages being called off as a result of positive HIV tests and "the resulting stigma would have been caused almost solely by the fact that religious leaders or other authority figures obliged youngsters to go for an HIV test." "We have to be cautious about this issue because we can't force people to take the HIV/AIDS test. We have worked with the religious leaders to try and get them to understand that," Pitzner said. The cramped living conditions of a refugee camp environment and the resulting lack of privacy, are also contributing factors. "With so many people living together, and just three metres between some of the houses, it is difficult to hide information, so when there is an issue, everybody knows about it before long," said Dr Amey Kouwonou, International Rescue Committee's health coordinator in Kibondo, a refugee camp for some 40,000 Burundians. "We cannot completely avoid this, but we have to try and reduce it." He said that increased privacy and confidentiality at Voluntary Counselling and Testing (VCT) centres was helping reduce the stigma and increase the numbers of refugees coming for tests - from about 10 refugees per month per camp in 2000, to about 80 per month per camp. "Now for VCT, we make sure you go in the same door as anyone else just going to see the doctor," he added. "Also, there is a coding system to make sure that is only the HIV counsellor that can identify the test results with a particular person." Kouwonou said the predicament was for those with full-blown AIDS, where with symptoms as proof, discrimination developed. "In fact, there is a big problem at camp level and we even get people that prefer to stay in hospital than discharge themselves and return to face their family and the community," he noted. To tackle this, UNHCR's implementing partners in the refugee camps have since 2000 been developing home-based care teams to identify people suffering chronic illnesses and then to provide guidance to their families and other people that would be looking after them in the community. Initially composed of a doctor, medical assistant, nurse nutritionist, community health worker and a social worker, the teams first sensitised the communities. Religious leaders and counsellors were invited to awareness raising sessions and invited to join as caregivers. While humanitarian workers admit there is little data on HIV/AIDS in refugee camps, there seems to be a worrying trend that the pandemic is getting a grip in the communities. Lifestyles have been forced to change in the camps, and the system of closely packed huts creates an environment in which it is difficult for families to maintain the traditional roles of authority and control. "In the crowded camp, adolescents have more new freedoms and options - including opportunities for early sexual experimentation - than were possible in the rural settings of their original homes," the UNHCR/WHO report said. Also, while poverty drives many women into prostitution, the report suggested that with humanitarian agencies fulfilling many of the roles that were traditionally associated with the men in society, "idle, frustrated men in the camps also have increased opportunities for sexual liaisons."